Wednesday, July 24, 2013

We are back from the beach! Every time we go to the beach, I look forward to seeing how Elena and Vivian have grown and changed. Litchfield Beach is a lovely, not too crowded, family-friendly destination that is just about perfect. Some of our extended family could not make it this year, so we invited our friends The Andersons to join us. The company was wonderful, and everyone had such a great time!

We've spent more time outside than in past years, increasing Elena's tolerance to sun and heat (last year E had a hard time handling the sun for more than 2 hours at a time). I wasn't sure how to help Elena navigate sand--she doesn't use the Beach Walker anymore. She can walk on her toes for a good while, but can't stop (without falling). This beach doesn't have much in terms of shells, so I didn't have to worry about her falling on sharp objects or scraping up her legs while crawling around the beach. Still, I was hoping Elena could spend as much time upright as she wanted without holding on to another person. I wanted to make Beach Crutches (to save her regular ones from sand/salt water), but I didn't have time--so we figured we'd try one day at the beach with no crutches, and if she needed them we'd just use her regular pair.

Everyone walking on the beach!

I don't want to sugar-coat it; Elena's gait looked TERRIBLE at the beach. Super high toes, all the time. I know she was excited, and I know the terrain was difficult. I did try to bite my tongue and let her enjoy herself--she can move much better, but it takes a lot of brain power for her to put her feet down and move slowly. She also did LOTS of sitting in the sand, which didn't help her legs at all. Still, she made a lot of progress from last year--she could get up to standing (even after a long day) almost every time, and could walk anywhere she wanted on the sand. She could carry little buckets, even some filled with water--and still have water in the bucket (lots of it, actually) when she arrived at her destination. We opted to leave her crutches at the house for the duration of the vacation.

First Day on the sand

Viv wave jumping

Something was strikingly different this year...size. The waves were strong most of the week, and the contours of the beach made it so the waves crested in a relatively shallow water. This made riding waves together with the kids almost impossible for me--Elena was too heavy and long for me to maneuver her onto a board so that I could ensure her safety before we were hit with a giant wave. Without the buoyancy of deeper water, I simply couldn't lift her, and Elena couldn't move fast enough to get on the board herself. If we went deeper, we'd have both been bowled over by a huge wave, which I will not risk. Vivian was slightly easier, due to smaller size and better stability--but it was still too much for me.

The great news is that there were lots of little waves (in about a 18 inches of water) that packed a punch, and the girls could sit in them and try not to get knocked over, or try to walk through them, or even ride them in on a raft by themselves!

Viv loves the waves

E wave jumping

Elena rode some waves solo!

We learned to time the tides just right to make huge walled-in tidepools. Everyone loved them!

Our shady pool (with Bonus Elena photobomb)

Double boogie tow

We did some of our favorite beach activities, including building a sandcastle. This is significant, because we were out there for nearly 5 hours! That's the longest we've been at the beach in one stretch. I was worried about dehydration/sun exposure/constipation, so I kept the kids hydrated and under umbrellas while we were out in the heat of midday sun. I am proud to say that we never got sunburned!

Sandcastle Day

E went to get some water for the sandcastle! That's E far far away!

Walking back with her cup of water for the sandcastle

Our sandcastle was the only one to survive the tide. It became our sand island.

High Tide pool

High Tide Pool

Making a sandcastle is tiring

The kids probably spent more time in the surf and sand than the water. There were two days, though, where the water was incredibly calm and the waves were few and gentle. The kids LOVED being out in the water in their swim vests, bobbing up and down in what Vivian called the "whoosh waves", where the water lifted their bodies up but no one got a face full of salt water.

swimming in the "whoosh waves"

E loves the beach

Shell searching

Elena and I went on a tandem bike ride. This was another size change--E is so much bigger, it was difficult for me to stabilize the bike in deep sand (she is strapped into the foot pedals). We actually fell once (right when we were leaving the house), because I forgot the driveway was small gravel instead of pavement. Elena got a small scrape but was ready to go. I was pretty frazzled, and kept my turns to a minimum if I wasn't on foot. My sister kate helped get the bike and Elena through the handicap access ramp onto the beach. I did this last year alone, and it was challenging--this year I could not do it without help. I decided on the way back to just take her off the bike and have her walk the ramp. One good difference is that Elena is stronger now, and she can really help me propel the bike!

Trail-a-bike ride

Biking on the beach

While I love this trail-a-bike, hauling it to the beach is a lot of work. Elena is doing so well with a bike (with training wheels) that we'll just take that on the beach next year. Jason took the kids on a different ride (2.5 miles) with their little bikes around the neighborhood (there are alligators inland, we all saw them! yikes!) in the heat of the day. Surprisingly, Vivian wanted to do another one the next day! I convinced her to go to the beach instead.

Grandpa readies the fishing net

Mom buries Viv

Sisters

Beachian

Every day there was something new to do. The kids played together in the house--legos, making necklaces, playing piano, board games, airplanes, showing each other some games on the ipad. We had our yearly Sorry! tournament--Grandma was this year's champion! Family dinners were wonderful--a full house, great company, and lots of home cooked meals. We did go out to dinner one night--that was after a big day at the beach, and Elena got sick that evening. I thought we were in for another few days of constipation-related vomiting, but she only got sick once. That's a WIN in my book! Again, thanks to all you readers for your suggestions to avoid constipation.

Jason and I decided to take the kids to a nearby historical plantation/botanical garden, Brookgreen Gardens. It was super hot outside. Elena used her crutches some of the time, and she and Vivian shared an adult stroller (plenty on-site) for the rest of the time. The driving factor was to get Elena on her feet and walking around, while still being outside. The girls had a great time--keeping them hydrated was the key.

Kids Village at the Botanical Garden

E mans the wheel at the Botanical Garden

Viv and E at the plantation rice paddy view

There was a learning zone for kids in a small, air-conditioned room where they could dig for artifacts, learn about amphibians and do rubbings and colorings. We spent a nice cool-down time there before going on a historical tour of the old rice paddys. With alligators. We did see part of one--it was bigger than a park bench. People-eating size. Yikes.

Alligator boat ride! We actually saw one!

Hot afternoon leaving the garden

Our last beach day came too quickly. Frequently, I find myself ready to return home at the end of a vacation. Not so here. I wish we had a few more days to soak up the sun and play in the surf.

Beach Kids

Our Family on Vacation

Our last evening, the waves were very strong--but at the evening low tide, there was a giant tidepool that provided a great water play space. Vivian started launching herself on the boogie boards, and all the other kids followed suit--even Elena. This is significant, because she is just getting proficient at jumping straight up-and-down. Jumping or launching herself purposefully forward is a new skill. And she did a pretty good job at it, too!

E launches her boogie board

The running of the boogie boards

"Surfing"

Huge thanks to my parents (Grandma and Grandpa) for helping out with the kids, the shade canopy, cooking, picture taking, and shlepping the bikes; thanks to Hawk and AMA for cooking and company; big ups to Aunt Kate, for helping with kids, taking pictures, and getting us to go exercise and with the bikes; and to the Andersons, who are great company. It was a well-deserved, much needed break!

This post has been a long time coming, but I just couldn't find the right words. Instead of trying to be perfect, I'll just try to get the post up.

Second grade, in a nutshell, was fabulous. She stayed with her first grade teacher--almost his whole class did, as he requested to "loop" with the class over a period of years. I believe this is common in Waldorf-style teaching, where one teacher stays with the class for a long time. I was excited about this almost from the beginning--Mr. Matt is a wonderful teacher, and I knew Elena would benefit from more time with him. An added bonus was I didn't have to get a new teacher familiar with Elena and her challenges, which was a huge relief. The best thing about a great looping teacher is they know your child's strengths and weaknesses, and have more time to address this. The class has a great understanding of each other and there was a very special vibe in that room.

Matt respects the kids, and helps them figure out their own problems and find solutions. He gives them a great amount of choice in the classroom, and fosters critical thinking--something I think is missing in schools across America. He treated Elena like any other kid in the classroom--as much as he could. Sometimes she had to have special seating, or extra time to get around. She did have (and sometimes expected) extra help carrying things and cleaning up, but was reprimanded if she waited around for her aide before starting those activities. Elena's aide had two other kids in the classroom she had to pay attention to--so E did not have her undivided attention like last year.

The best parts I witnessed when I got to visit the school were the everyday activities...seeing her get into the mix in P.E. (and her classmates playing with her, even though she didn't move like they did), hearing "Hi Elena!" countless times in the hallway (I've never seen most of these kids), watching her run and play (with her crutches) with her girlfriends during recess, seeing her do a project with a classmate. Acceptance, friendship, learning, play, challenge, support, excitement, laughter were everyday events. Super Awesome.

Academically, Elena struggled (struggles?) a bit. Overall her scores were very good--great even, and we are very thankful for that. The biggest realization was she really needs proper seating to work well at a table or desk, and she didn't always choose a good seating position. She also had (has?) problems understanding certain math concepts. This is tricky, because Matt teaches "number sense" rather than just "rote math" (the way I learned it). I feel very strongly that "number sense" is a better way to teach mathematics--relationships between numbers, "what's larger and smaller", "what's in the middle", counting by 2s, 3s, 10s, etc., and a different way of looking at place value. I think it's better--provided the child can connect the pieces by the end of the year. Elena didn't. She had some of it, but I think she just got confused. And frustrated. Jason and I never had an issue learning math concepts until high school (I did have an issue with long division for a short while), so we couldn't figure out why she didn't get it--and I was afraid to start teaching her a new way. We decided to get her a 2nd grade math book for rote math work, and spent more time working on sample problems Matt brought home. We also got her a recommended tutor for the summer (we call him the Math Coach) and Elena LOVES him, and I think they are working well to connect the number sense pieces together so E is ready for third grade.

Another thing we noticed is Elena's artwork/choice time. She likes to draw and build things (houses, like a room layout for a paper doll) but I noticed it was always two-dimensional. Houses were always drawn and built like a perimeter (even with legos), as well as furniture and creatures living in them. It's weird to me she would choose to do that so often, especially as she has some fine motor issues (it takes her effort to pick up small flat pieces of paper, for instance). This "2-D" rendering made me wonder about her ability to see things in three-dimensional space. I know she can--she can throw and kick, hit a ball with a bat, she can catch and aim. I think it has something to do with core strength--her arms are almost always by her sides (walking with crutches), and rarely out from her torso (airplane arms, or holding an invisible beach ball). I read some studies that talk about fine motor skills and the strong correlation of understanding math concepts, and wondered if that was one of our problems. It doesn't mean that people who lack fine motor skills CAN'T learn math easily--it has to do with a different method of thinking about space and conceptualizing something you can't see--opening up the brain to a different way of thinking, if you will.

That's where I got the idea of our Big, Messy Summer. I want E to use her hands, get her arms away from her body, make something BIG and creative and fun and crazy. Swimming and horseback riding are helping, of course. If you have any other suggestions, let me know!

Wednesday, July 10, 2013

First of all, a HUGE THANK YOU to everyone who responded to my request for avoiding constipation for Elena. The followers of this blog provide invaluable information regarding life with cerebral palsy, and I seriously appreciate your readership and your comments.

So, after overnight hospitalization for constipation, with x-rays to prove impaction, we were sent home and told to give enemas every 2 hours until productive. After #12, we switched to 1x/day for a few days. We stopped at #14 or #16, I forgot. Elena was a pretty good patient, even though she seriously disliked what we had to do. I felt so bad for her...once she was eating and drinking well, I knew we had to find some changes to improve her ability to make bowel movements.

That was two weeks ago.

We're doing the "full court press" against constipation. Elena will do just about anything to avoid this happening again. I've made the following changes:

1. Reduce the amount of milk Elena drinks. She is still allowed milk (we switched from whole to 2%), but only for one meal (on average). Instead she will substitute water.

2. She takes two probiotics at breakfast every day. We decided on Culturelle Children's chewables and Digestive Advantage probiotic gummies (Wow they are expensive! But still cheaper than the hospital). She also has yogurt for breakfast several days a week, half of the time sprinkled with crushed seeds/ground oats/flax seeds.

3. We've changed her Miralax dosage from 2 tsp to a full capful (~3T) in a super large cup filled with 1/2 apple juice, 1/2 water. She's supposed to drink it throughout the day until it is gone.

4. I loved the suggestion of increasing her fiber intake. For her age, the general rule is age+5 grams of fiber/day, in her case this is 13g. I think she is close to 10 on a regular day, so my goal is to try to double it. I haven't made a huge change in her diet to achieve this yet--but we are examining food she normally eats and asking ourselves "does this have fiber in it?". Some meals there are lots of fiber-rich foods, and others there is ZERO. I'm switching foods like pasta for the whole wheat version (which none of us really like) and trying different grains instead (which no one but me likes).

5. Encourage water drinking throughout the day.

One thing I really noticed, though, is that I can't see a way to dramatically increase her fiber intake and keep her calorie intake high. We've tried extremely hard since she was a baby for her to gain weight. I'll have to find a happy medium if our dietary changes can't keep up with her energy demands--or if she can't keep close to 38 lbs. My gut feeling is she'll be fine without pushing high-calorie real foods--or, at absolute minimum, we keep the cheese and dairy and pasta intake while making sure to add something to the meal that has a better fiber content.

Overall I think we are on the right track. Thank you so very much for your comments!

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.